Brief update with change

This photo, taken some years ago, is of Rachel, a dear friend, who lives in Arizona.


Dear friends and family,

Yesterday, Merwin and I had a long session with Dr. Mascarenhas and Amy at Mt. Sinai. It looks like I might qualify for one or two drug trials. We were sent home with a contract for the one we like better: it requires me to be at the hospital regularly, but I can take the medicine at home, 3x a week, with some exceptions when I have to take the drug in the office. There is quite a lot to be done before I start, all of which must happen within 3 weeks of starting,so I have to wait till I get the green light. Note: after writing this, the red light came in from Dr. M's office: my EKG disqualified me. Now I will await news of the other trial, to see if I can qualify.

Yesterday my bloods looked good. No blasts, which is good news. We spoke about the itching, neuropathy and fatigue, none of which might be helped by either drug. The fatigue, I think, may be due to all the meds I take for itching. Up to very recently, neuropathy was a reason not to be put on either trial, but that has just changed in the case of one or both of the candidate trials. I have to read and accept the terms of the contract, get a chest x-ray and echo-cardiogram from my general doctor, a cardiologist, ultra-sound at the hospital to see spleen size, EKG, etc.

The second trial requires me to be in the hospital overnight about once a month, I think, and receive infusions. I don't know what else is required until I read the protocols, which just arrived.

Dr. M told me that I looked good and full of energy. He said this personality aspect would help me—probably has helped me. He admired the sparkle of my eyes also. None of this is more than professional; that is, he considers these aspects signs of possible success in staying alive (more so than people who don't look energetic, whose eyes are dull). What he does not realize is that being in that office, with the hope it encourages, energizes me. True, I am often smiling for no reason at all, just for the joy of being in whatever pleasant space I happen to be, listening to music, writing, thinking, reading.

In the back of my mind, I am thinking of Macbeth and how Laury and I will work on our chapter.

Very rainy here today—a good day to stay indoors.

Love to all,
Bernice